Newly DX with IDC and thymoma. 32 yrs old and scared.

poeticrevolver

Hello. I am 32 and was just recently dx with IDC, and today it was confirmed by my thoracic onco that I have thymoma. I may be at stage four. I have three areas showing up on PET. My primary onco said that if the thymoma is related to the bc, "that would be very bad".

I have been married since I was 17, and we have three children, ages 9, 12, and 14. My BRCA tests were neg.

Needless to say, I'm scared. I am trying to get as much info as I can. Because of this mass in my chest, it's somewhat changing the whole thing(treatment).

All the docs said I was too young. Said I was having anxiety. They wanted to wait on any more testing. I had to demand an MRI, and a biopsy.

Would you believe that five years ago I had a mammo and it did show a small mass. Birads 0. When it came time to do an  ultrasound, the doc spent about 1 minute looking for it, and said"you're too young, it's not in your family" "go home, and know that you DO NOT have bc."

Guess what folks, 32 yrs old, dx IDC, possibly stage four! I wish I had been more educated at 27 about bc. I just did'nt know much at all. No one , to my knowledge, in my family has had it.

Talk about anger!!

One thing I can say, I am so thankful that I have my children, and my husband. Yes it bothers me that I will prob loose my breasts, hair, and have a full hysterectomy(which has already been recomended), and a thymectomy.

 I just want to live!! There is so much I still want to do with my life!! I want to go run on the beach again, I want to ride bikes with my kids again. I want to wake up with energy and the excitement of the day to come! Now I'm sitting here, crying, scared to death that I may never do these things again. I am trying so hard to be strong, but it's so hard to be superwoman when there is so damn much wrong.

On top  of this, I have Lyme Disease, which brings a whole lot of terrible symptoms and a whole lotta pain

 . I just pray that I get through this so I can help others, and live, watch my children grow up, get married and have children of their own. I have hardly lived! I just don't understand , it just does'nt seem fair.

One thing I have learned is to listen to your gut. All the time!

Mine led me to the answers I now have, even though they are'nt what anybody would want to hear, at least I know.

Thanks for reading, I hope I can get to know my new sisters soon! I need all the support I can get.

Hugs to you all!

chrissyb

Welcome poeticrevolver, you have definately found the right place to be. I cannot give you advice about your dx but I can reassure you that everyone is as scared as you in the beginning.  The best advice all would give is to take things one day at a time.  When you have all your information regarding your dx then you can make good informed descisions. Until then, just know we are here anytime you need us. Someone will always answer you. Love n hugs. Chrissyb

squidwitch42

poeticrevolver,

You have a wonderful spirit, full of strength.  I am betting on you, because you have already fought to be heard, and you haven't backed down.  There are some very strong women and men here who defy odds every day.  There is also a wealth of advice and experience to guide you. I know I had to use some anti-anxiety meds once or twice when I was overwhelmed.  I also swim to relax..so it's also time to do those things you find soothing to your soul. 

you are in my prayers, as all of us are. please keep coming here for support, and feel free to share anything. 

traci

NannaBaby

Hello poeticrevolver!

I am only 28 and have just been DX with IDC stage 3a. And I am currently undergoing neoadjuvant chemo to shrink the tumour before surgery.

 I too had a hard time with doctors! I wasn't taken seriously when I told them my breast was changing in shape, size and feel.  I think it started 2 years ago when I had my first ultrasound - DX fibrocystic breasts.  I regularly complained to my doctor that my left breast was continuously getting bigger! He always found a way to blame it on my hormones!  Just last January he sent me to a hormone specialist instead of a breast specialist because I was too young of course.  My hormones are normal, but the specialist did say that my breast should be examined by a surgeon! Thank god for her! My left breast was at least a DD cup size and my right breast was a C cup. 

Anyways, I too get angry and frustrated and sometimes wish I could sue my doctor! But, now as things are coming along well for me, and I'm understanding my diagnosis and prognosis.  I have learned to accept it.  That I can't do much about what happened in the past.  I try to keep a positive relationship with my GP.  And continue to enjoy my life and not worry about things I cannot change.

 Hugs and kisses! Waiting for results is hard, but you will get through it.

poeticrevolver

Thank you all so much for your responses!

I really needed the encouragement!

Wow, nannybaby!! Thank you so much for sharing your story!

The one thing I am still learning,....not to worry about the things I can not change, the past is the past, and I do need to let go  of the anger, and move forward with a positive attitude.

I'm having my lumpectomy on July 20th. I'm a bit nervous about it, but I know I will get through it.

Thanks again!!